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Tymlos or Forteo to treat osteoporosis with underlying adult HPP
Anyone have experience taking Forteo or Tymlos for osteoporosis with underlying Adult HPP?
I am in a unique situation. I have adult HPP (confirmed with genetic testing and labs, etc.) but thankfully, I do not yet have any outward symptoms of HPP( Hypophosphotasia). No broken bones, etc. but I do however have confirmed osteoporosis.
Patients with confirmed HPP cannot take any biphosphonates. So, I'm reading I'm limited to Tymlos, Forteo and maybe Evenity.
Years ago, I wish I could have taken hormone replacement therapy but couldn't because of family history risk (since then no family risk.)
Those with active HPP with symptoms usually take enzyme replacement therapy to replace the low alkaphosphotase, but without active symptoms, some doctors recommend Tymlos or Forteo.
Wondering if anyone has HPP and is taking Tymlos or Forteo? What kinds of side effects have you had? And what did you take after 2 years of treatment to lock in the results?
Waiting for a specialist appointment.
Thank you.
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My endo said that alendronate is required to lock in the gains after Forteo. I'm not sure if that was just do to my specific health issues or if it's the same for everyone. Otherwise, I like doing Forteo and recommend it.
Hi
Have you had any side effects from forteo? I just had 2 more fractures.Previously i had one. I have been on reclast for the past 3 yrs. My endo now is wanting me to start forteo.
I had just a little irritation for the first week or so of Forteo and then no other side effects.
My bone density was normal, but I have had over a dozen fractures and my osteoporosis diagnosis was based off the number of fractures. I most recently (3 months ago) fractured a toe (fracture 15 or 16). My endo says toe fractures are common and is not because of osteoporosis. I just had a dexa scan and my numbers are good.
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1 ReactionYour Dexa scan was ok, then no need to worry too much but read relaxed life style.
Had a left knee replacement. Two month evaluation, I was fine. During exercises I pulled a groin muscle on my right side and have severe pain in my groin, buttock and around my hip. I do have some osteoarthritis in my right hip but was ok until I pulled the groin muscle on. Now in intense pain in those areas.